We had a great visit w/ B tonight! We called on the way, to let them know that we were bringing dinner for him. Somehow, the message got lost, so he had already eaten, but he ate a couple of onion rings, and totally enjoyed the vanilla shake. He was really in a good mood. He spoke w/ the doctor today, who told him that he will be going home either tomorrow after our family session, or Friday. He is really excited about that. We walked around the grounds. He & Donovan played *ball* with the little seed-type things. It was so awesome to see B playing and enjoying himself.
He told us that they are going to take blood tomorrow. He wasn’t nervous about that at all. According to him, it hurts more to get a shot than to have blood taken. This difference is because when you get a shot they are putting stuff in, not taking it out, according to him anyway. We talked some about how with his new medication, he will probably be having blood drawn quite often at first, and why. He seemed interested in how the meds need to be kept at a certain level in his blood. We also talked about how he gets hot at night, and can’t sleep. I was telling him that I have learned that he gets so hot because of the disorder, he seemed to find that interesting as well. I pointed out to him that since we now know there is a neurological disorder involved, we can focus on finding the right medication(s) and therapies to help deal with things.
He got down when it was time to go in, and he said he didn’t feel well. We talked through it though. I reminded him that he just needed to hang on a couple of more days. He was good when we left.
Now we’re just praying that the family session in the morning goes well. Hopefully my questions about blood levels, medication levels, dosing schedules, etc., will all be answered. If not, then I will make sure they are before we leave the hospital with him.
I’m hoping to find some support groups here locally that we can participate in before we move. I’m also looking forward to when we move, and what is available out there as well. So many changes going on, it’s exciting! I’m really feeling hopeful at this point! This diagnosis is just the beginning, of a looong road, but it is the beginning of help for my baby boy! Which is ultimately, help for our whole family.
Thank you Jesus for holding us through this, we could not make it without your love and support holding us up. People keep asking me how I’m doing, and I say I’ve got a few threads left. I do, and they are all being held in the hand of the Savior! Praise God for doctors and scientists who are studying the brain, and trying to find a cure for this disorder! Thank you for bringing us through this, let it bring glory to you God!